Intellectual Developmental Disorder and the DSM-V

The deadline for public input on revised diagnostic criteria for autism in the DSM-V is June 15th. There’s been a lot of controversy on this, so be sure that you’re well-informed and that you voice your opinion about any of your concerns. See this blog post for a starting point on where to research what’s been going on with controversy: http://www.girlwiththecane.com/diagnostic-criteria-for-autism/

Also bear in mind that there’s been controversy over the revised diagnostic criteria for mental retardation, starting with renaming it Intellectual Developmental Disorder.

Yes, “Mental Retardation” is Diagnostic Criteria

And bravo to the American Psychiatric Association for finally moving away from it in the DSM-V. Services providers Canada and the US have been using the less emotionally-loaded “intellectual disability” for at least as long as I’ve been involved with developmental services, and the US government has recently made a commitment to use “intellectual disability” in its disability legislation. It’s going to be much easier to get people to stop using “retard” and “retarded” in reference to people with disabilities when there’s no clinical term with the word “retard” in it to give those slurs any false air of legitimacy. Like most things, however, this particular redefinition of diagnostic criteria isn’t that simple:

The criterion that the disability begin before age 18 disappears, replaced by one that the disability begin “during the developmental period”.

The IQ criterion, now 70 or under, becomes more flexible, shifting the focus more to the individual’s level of adaptive functioning.

“Intellectual Developmental Disorder” Doesn’t Roll off the Tongue…

Advocates at organizations such as The Arc and the American Association on Intellectual and Developmental Disabilities fear the DSM-V’s use of “intellectual developmental disorder” and the departure from the more standard “intellectual disability” will confuse people. I do agree that this could potentially happen. However, it’s not like the official diagnostic term hasn’t differed from the everyday language for years. I have never in my career, unless I was speaking specifically in clinical terms regarding the official DSM diagnosis with a colleague who understood my context, spoken about “mental retardation” in my work. I use “intellectual disability” with the people I support, with their families, and, the overwhelming majority of the time, with colleagues. I probably still will, unless a superior directed me to use “intellectual developmental disorder”. I doubt I’ll be alone.

Now for the Famous “That Being Said…”

I’m fascinated by the “developmental” element in “intellectual developmental disorder”, particularly in light of the fact that there will be more flexibility around the IQ standard. A lot can happen to a child before age 18. They may not be born with a condition that traditionally causes an intellectual disability, but what if a traumatic brain injury caused by a car accident leaves a teen with the severe deficits in adaptive functioning that a teen with an intellectual disability might experience? Or impair ability to perform on an IQ test to the point where it looks as if the teen’s IQ has suffered a drop into the zone associated with intellectual developmental disorder? The developmental element provides a way to assist clinicians to differentiate between what is truly an intellectual developmental disorder and what disabilities require a different diagnosis and perhaps more appropriate treatment and supports.

Because Diagnosis Determines Supports

For a long time, Ontario’s definition of developmental disability (often used interchangeably with “intellectual disability” in the province) was IQ-bound (as is the DSM-IV’s diagnostic criteria for mental retardation). I’ve seen how this can make decisions tricky about who gets and doesn’t support within the developmental services sector, particularly for people with an IQ in the low 70s. People in this “borderline” zone got from services that they needed because of a couple of IQ points.

Watching how the IQ criterion sometimes prevented people from getting services that they need, creating more cracks through which people could fall, was very frustrating for me and for others in social services. Knowing that Ontario’s definition of developmental disability is now less IQ-bound and more skills-based is a relief. I was relieved the see the APA making a similar shift in its proposed diagnostic criteria for intellectual developmental disorder. Unfortunately, I haven’t been in a position to get any hard data about how that shift is working for people with developmental disabilities in Ontario, but the move does make intuitive sense to me.

The Bottom Line

I do have concerns:

I’d prefer that the APA stay away from the word “disorder”

I think that the developmental period in which a person needs to develop the signs of an Intellectual Developmental Disorder in order to receive the diagnosis needs a description.

I think that diagnosticians are going to want to know how much latitude they have with the IQ criterion, but I assume that they will receive information about that.

We’ll see how this goes.

Please submit any concerns on proposed redefinition for diagnostic criteria in the DSM-V before June 15:

Oddly enough, I was just reading about this change this very afternoon. I have to agree with you that the term “Intellectual Developmental Disorder” is a mouthful. Of course, the thinking is probably (and because people are who they are they are likely to anyway) that folks will shorten it to IDD (which will get everyone confused with Intellectual and Developmental Disabilities. Which I thought was where were heading. I also thought the criteria were somewhat vague and needed a bit more clarification. It seems as if they’re big into streamlining things this time around (in the DSM, I mean).

http://www.runningsteps.ca/ GirlWithTheCane

Yes, Roia, it does look as if the APA itself plans to refer to it as IDD (which, as you pointed out, isn’t going to be confusing *at all*, right?) The fact that “intellectual disability” and “developmental disability” are often used interchangeably in Ontario confuses people enough with merging elements of both into one clinical definition and then creating a new acronym for it.

Briefly as I was writing the blog, I thought I got a sense of the bigger picture behind the specific changes to the autism and mental retardation diagnostic criteria in particular, but I’m still unclear about many things. I really do like the focus more on adaptive skills for both autism spectrum disorder and IDD, but I wonder if the APA realizes just how much this shift has the potential to change eligibility for supports and support delivery for a whole lot of people. It’s going to be very interesting to see how things unfold if these new definitions go through as drafted.

Thanks for commenting, Roia…it’s great to hear your perspective on this.

Nick

As per your last point, I have been waiting for more clarification regarding the latitude for diagnosing ID related to IQ criterior but have yet come across anything. Have you come across anything since positing this?

http://www.runningsteps.ca/ GirlWithTheCane

Hi Nick, thanks for your comment. I haven’t seen anything to indicate that the the DSM steering committee went a different direction from the one in which they indicated that they were going to go…but you’ve reminded me that I meant to check on this and update. I will ask some colleagues about what eventually happened with this and revisit this topic.

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About The Author

Sarah Levis is a freelance writer, disability advocate, and owner/head writer at Running Steps. She has 20 years of experience in the disabilities field and far too many strong opinions, but isn't nearly as scary as you've heard.